The physician and ethicist Eric Cassell has argued that infants and children with significant cognitive impairment cannot suffer. For Cassell, these children, who do not possess language use and agency sufficient for autonomous action and subjective interpretation of their life-worlds, do not qualify as persons, and therefore, are unable to suffer.

This argument has exercised considerable influence on academic scholarship on suffering as well as medical practices related to childhood pain and suffering. For example, parents of children with profound disabilities are often granted broad decision-making authority regarding the application of life-sustaining interventions for their child within medical settings. This liberal allowance for parental decision-making, perhaps especially when against advice from medical providers, is grounded in Cassell’s argument that children with profound impairments do not suffer. In other words, because their children are not truly suffering, parents are granted nearly unlimited control over application of potentially unadvisable interventions.

Contrastingly, in settings where pediatric suffering is taken as a deeply serious reality, different questions regarding life and death arise. This contrasting reality at its extreme is exemplified in the Netherlands where, since 2005, neonatal euthanasia has been permitted by a policy known as the Groningen Protocol. To meet criteria for the Groningen Protocol a pediatric patient must be experiencing unbearable suffering with no prospect of improvement, or as it is more blandly described, have a “future with a very poor predicted quality of life.”

These contrasting realities of life and death highlight the significance of descriptions and conceptions of pediatric suffering. Yet, in response to these complex realities, no substantial conceptual, analytical, or empirical work on pediatric suffering currently exists in medical literature. The objective of this interdisciplinary panel discussion is to begin the process of addressing this gap through (1) a critical re-description of pediatric suffering and (2) a robust exploration of ethical, clinical, and theological responses to realities of childhood suffering.

In order to begin this interdisciplinary conversation, our panel considers the following case. Baby Ruth is an 8 day old neonate with lissencephaly, a rare genetic brain malformation characterized by the absence of normal folds in the cerebral cortex and an abnormally small head. Symptoms of lissencephaly include profound intellectual disability, an unusual facial appearance, difficulty swallowing, inability to grow, muscle spasms, seizures, severe motor impairment, and deformities of the hands, fingers, and toes. Children with lissencephaly require total and continuous care from others to survive and rarely live past ten years of age. In our clinical case, baby Ruth is residing in the neonatal intensive care unit. On the morning of Ruth’s 9th day of life, her medical team discovers that she needs surgery to remove a section of dying intestines, if she is to have any chance of survival. Both Ruth’s parents, who have a deep Christian faith, and her clinicians, are conflicted about the operation. Both wonder if Ruth’s constrained future and vast potential for suffering recommend against surgery.

As a starting point for the panel discussion, the first panelist, a pediatrician and medical ethicist, will build on a critique of Eric Cassell’s “subjectivist” account of human suffering and show why pediatric suffering must be understood objectively. To do so, the panelist will extend teleological arguments found in the work of Alistair McIntyre and Elenore Stump. The panelist will argue that child suffering can only be understood as a set of absences3⁄4absences of conditions such as love, warmth, and freedom from pain. An evaluation of these abscesses reveals the exquisite dependency of children. It also discloses why pediatric suffering is necessarily a social and political event. Unlike adults, children will never be either the authors or mitigators of their own suffering. Rather, children will always rely wholly on others to resist suffering, grow, and flourish. Finally, the first panelist will show how this understanding of pediatric suffering is vindicated in empirical research on (1) childhood reactive attachment disorder and (2) pediatric quality of life.

The second panelist, a surgeon and medical ethicist, will draw on this understanding of pediatric suffering to examine the ethics of withholding surgery from baby Ruth. On the one hand, some parents and physicians, in an effort to stave off suffering and death, use surgery to preserve ‘bare life’ regardless of the cost. Conversely, others focus on ‘quality of life’, and argue that aggressive treatment merely extends pointless suffering. Both approaches can be problematic. First, taking up Jeffrey Bishop’s argument that “life-at-all-costs” is not intrinsic to religious faith, the panelist will argue that traditional theological anthropology understands technical intervention to be obligatory only when it serves one’s spiritual end. Second, the panelist will argue that while “life-at-all-costs” minimizes any sense of tragedy, contemporary bioethics, with its emphasis on a utilitarian calculus, fails to truthfully acknowledge the unresolvable uncertainty of our predictions about quality of life or long-term survival. Finally, the panelist will argue that medicine must learn what it means to care for children born suffering without denying the tragic.

The third panelist, a clinician and theologian, further expands on the interdependent realities of pediatric suffering. This panelist offers a theological description of this interdependent and social notion of childhood suffering, rooted in Christian Scripture’s account of anthropology (exemplified in Pauline literature). In considering the life of baby Ruth, this panelist explores how suffering understood in an interdependent framework might a) shape therapeutic, family- centered clinical intervention for Ruth and her parents, and b) illustrate a distinctively Christian commitment to interdependent personhood for the reception of Ruth as a gift by her clinicians, her family, and her broader community. ​The final panelist, a theologian, will raise the conceptual issue of the difference if there is such a difference between pain and suffering and what, if any, difference that distinction makes for how children like baby Ruth are cared for. The question of the difference between putting to death and prolonging dying will also be raised. But the main issue this panelist will broach is the question of where the commitment to care for children born suffering comes from.